Starting Chemo March 2015

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  • Meme117
    Meme117 Member Posts: 194
    edited February 2016

    thanks girls!! Can u believe still no call, wtf. Any hoo what do we say about a pain we've not had before? 30 days? 2 days in a row sharp side pains, but I've has a cough for 2 weeks. Ugh

    E sorry you need to wait all positive thoughts your way.

    Happy for you DD and your non bill, I've had that with a much bigger bill and almost had a crazy freak out on the staff, though my husband thought I was nuts.

    Sorry T for u and family, your little granddaughter - she is so lucky to have you!

  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    Maryellen, something sticks in my head that if the pain is there unrelenting for 3 weeks, alert the doctor. Of course, I never wait that long, full disclosure constantly lol.

  • eheinrich
    eheinrich Member Posts: 792
    edited February 2016

    no eye cancer (pigment around my optic nerve - yearly scans), blood work for next week's onc appt coming back fine so far. A good day overall. Me and my displayed pupils are lying low.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited February 2016

    E- so glad you got this one knocked down. Yay!🎉🎉🎉🎈🎈🎈🙏🏻🍸

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2016

    E,glad you got some good news!!!!

  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    Awesome Eileen! I love hearing good reports

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016
  • Trvler
    Trvler Member Posts: 3,159
    edited February 2016
  • Trvler
    Trvler Member Posts: 3,159
    edited February 2016

    Is anyone else having a great struggle with only having tumor markers as followup care? I just feel these zaps in my breasts all day long and I just worry so much. I now both the BMX and the rads can cause the zaps but I just feel like many of them are in the same area as the original cancers. If they find an issue with a tumor marker, isn't it kind of late by then?

  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    Allison, I hear you. After having my ex husband die unexpectedly after being given the all clear, I am doing some scans. Brain MRI Friday (Her2 likes the brain I guess), and a PET scan as soon as my cold goes away. I have to pay for the PET scan myself ($1,400). Initially I was worried about radiation exposure, etc., but my mom gets annual PET scans and has for years with no issues, and she is in terrible physical shape. My breast Doctor said at this point a mammogram or ultrasound won't show anything if it came back because at this stage it would be too tiny. And she said that the ASCO guidelines say finding activity earlier doesn't make a different, but she doesn't agree. I'm an er negative, so the anti-hormonals aren't available for me, only chemo and the Herceptin drugs, so I want to make sure if something comes back I am strong enough to withstand further treatment.

    So I am anxious about further testing, but I have to do it. Since my daughter's father in law died in December and now her father, both of heart attacks, my husband and I are all they have, and I need to be here as long as I can.

    Having said that, I have all kinds of weird aches and pains, and I use the three week rule before I panic. If something stays continuously painful for three weeks, I will be getting things checked out. So far, anything that has zapped or zinged me has gone away before my three week deadline, so I chalk it up to residual treatment effects, old age, or normal life aches and pains

  • Meme117
    Meme117 Member Posts: 194
    edited February 2016

    Good news E.

    Thanks Theresa full disclosure lol. I thinknits from all the coughing, 2 weeks sinus cold now every winter it sucks.

    Anyone on Tamoxifen cry a lot? I feel like a big cry baby, every day this week so far something has made me emotional. Is this part of my new normal?

    DD this is the doctors group http://counton2.com/2015/12/08/2-your-health-monal...

    The woman in my local support group has posted that she is very happy with the results. She has offered to talk with members of ouyr local group and I think she would speak with you, do you want me to message her?

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016

    A 3-week rule seems reasonable.

    Meme, my frustration tolerance is very low on Tamoxifen.

  • molly1976
    molly1976 Member Posts: 403
    edited February 2016

    My MO doesn't even do tumor markers. I have two more mammos at six month intervals and then back to once a year. It makes me VERY nervous but I do feel confident my MO is well educated about the latest research, so I try to trust his judgment.

    I got my port out today. So I guess that's that - here I go, out into the world like a regular person.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2016

    I don't get tumor markers either.I sure wish I did!!!!! I am getting a breast MRI in Sptil, but that is only because one of my tumors hid under the pec muscle. Of course, it was not detected on MRI, so maybe it's a waste, but I do want to get s new baseline

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016

    Congrats, Molly!

  • Meme117
    Meme117 Member Posts: 194
    edited February 2016

    congrats Molly! So looking forward to that day.


    Just cxame across this if anyone needs a laugh http://www.invasiveducttales.com/cancer-feeeelings-animated/

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited February 2016

    Molly- congrats on getting that stupid port ( who they promised was our friend, remember?) OUT!!!!

    I think the whole post tx program is worrisome, no matter which way they go. My MO does the markers. But at the same time says they are unreliable and used only in conjunction with other clinical symptoms.

    The scans carry risk of radiation, but what is the risk of not detecting mets early? And would the tx really be the same either way?

    I think all we can do is try not to second guess what we've already done, and try to learn to live for today. Do what feels right to your gut, and within your resources/limitations. I myself find this an exceedingly hard skill post dx. But I'm working on it with varying degrees of success.

    Love you all and I hate to think of any one of you in turmoil or stress over any part of this. If love could heal, we'd all be walking away. Clean of cancer. Then we'd get hit by that STUPID bus.

    HUGS TO ALL TONIGHT.

  • pboi
    pboi Member Posts: 663
    edited February 2016

    Great news Eileen! Congrats Molly...I know getting my port out made me feel so much more like a normal person.

    I too wish I could get tumor markers too, though it might be unreliable, it's something that could be helpful.

    I had my first Zometa infusion last week and the side effects were horrible for me...felt like chemo all over again. I'm better now...but the experience and all the aches and pains have me in and out of the rabbit hole again. This period post treatment has been so hard for me, I'm finding it hard to resume my normal life...it seems those fears of recurrence are always invading my thoughts. Of course the aches and pains always have me wondering...think maybe I should try therapy again.

    PB

  • rleepac
    rleepac Member Posts: 755
    edited February 2016

    I don't get tumor markers either (just CBC and chem panel every 6 months) and when I added them to my last blood draw my MO go upset that I ran them. He said they aren't reliable and he only uses them for stage IV (which I'm not) monitoring. I smiled and said ok but I plan to run them on myself every 6 months anyway...because I can and it would put my mind at ease.


  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    Last Herceptin down the tubes! After follow-up testing, I will get my port removed within the next month.

    Can't believe last treatment is done!

  • rleepac
    rleepac Member Posts: 755
    edited February 2016

    That's so awesome T!

    I have 2 more to go and I've already got port removal planned for the Monday after my last infusion :)

  • rleepac
    rleepac Member Posts: 755
    edited February 2016

    Ok, so I think I need some affirmation here.

    I know that chemo is done but I still have 2 more Herceptin treatments, one more surgery, and 10 years of Tamoxifen (which I'm not liking so far at all) ahead of me.

    My head tells me that I should feel better at this stage of the game and I do obviously feel better than I did during chemo. But, I still feel generally shitty EVERY DAY! I just don't feel like I've turned the corner yet but I think that I should. Does that make sense?

    Is everyone else back to 'normal'? Or do you still feel crappy? Is it just me?


  • pboi
    pboi Member Posts: 663
    edited February 2016

    Hurray! Congrats Theresa!!!

    It's not just you Bekah, I feel the same and had been wondering the same thing! Had my mx/oophorectomy surgery last Nov and since that time trying to recover from the events of the last year. I can tell I'm better than this time last year, but definitely don't feel like I've turned the corner yet either. My body has endured a lot over the past year and instantly I became menopausal. I've heard it can take up to a year or more to recover from all this, and even then it's hard for me to accept that even then I will likely not get back to normal like I used to be. It's hard to feel so crappy all the time! But I'm trying to be thankful for what health I have now...keep trying to move forward...and hope as more time passes I'll feel better.

    What in particular has you feeling so crappy? Or is it just a general feeling of crappiness (is that a word?!)

    PB

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016

    Congratulations, Theresa!

    Bekah, I don't feel like myself, though I do feel progressively better. If I sit for half an hour, my legs ache and are stiff until I loosen them up. I have constant vertigo. I can't lose weight despite hours of Zumba and walking. I have yet to sleep enough two nights running. So yeah, I see improvement, but there's a lot I have to track or be cautious about. I'm finding exercise really helpful for getting toward a "new normal" that I can live with in the aftermath of treatment and the Tamoxifen years.

  • rleepac
    rleepac Member Posts: 755
    edited February 2016

    Pboi - I do have a general feeling of being 'unwell' but specifically I have severe joint pains in my hands, feet, knees, and low back as well as a deeper bone pain in my thoracic spine. I feel my cognitive function is impaired with memory issues and I have difficulty speaking sometimes...like the words don't come to me fast enough. I get dizzy and nearly fall over when I close my eyes and bow my head to pray. I'm still very tired most of the time.

    Why? I don't know...I'm hoping its related to Herceptin but I have a suspicion it's related to Tamoxifen or the Herceptin/Tamoxifen combo. I won't know for sure until I'm done with Herceptin at the end of March. It's just stupid (I know - very mature) and it feels like it should be over and I should have been able to move on already!


  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    Ksusan, with you on the weight loss thing. On the whole, haven't ever really felt sick. Chemo blew up digestive process a bit and some neuropathy, but that has all gone away. I mean, I have aches and pains, creaky sometimes in the morning but hell, I'm almost 54 so I would expect some creakiness. But I'm not on any anti hormonals, so that probably makes a difference. And I sleep perfect except when anxiety builds up. Kids, grandkids, husband got the flu thing and have been sick for two months off and on, and I had about three days of not feeling well enough to exercise. So I feel fortunate.

    Oncologist told me today most important thing I can do long term to avoid recurrence is exercise. And daily baby aspirin won't hurt either. She said all kinds of data coming out now about the importance of exercise.

    Relieved to be done with active treatment, but a little uncertain now, feel a bit cast adrift

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016

    I think this is another reason to track exercise and wellness activities in a group--it's a thing we can do, and the group helps with both accountability and not feeling so adrift.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited February 2016

    Bekah- it's not stupid. I appreciate your honesty. I think I feel a bit better on the AI than the Tamox, but a lot of the things you mention plague me still.

    T- such great news. Congrats!

  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    Ksusan, yes, I agree. Exercise makes me feel like I'm being proactive. Whether it is placebo or real doesn't matter because mentally it empowers me.

    Doc is also sending me for a bone density scan because she said we want your bones strong so cancer can't invade there. The denser the bone is, the less likely cancer can invade. Hopefully all my exercise has helped keep my bones strong. At least I tell myself that's why I can't lose weight, it's because I have dense bones haha

  • Trvler
    Trvler Member Posts: 3,159
    edited February 2016

    Bekah: HOw did your blood look? Was it ok?

    So glad to hear that the perception will end soon for you ladies. I hope that makes you feel better.

    I feel good, but I just can't sleep. I am freezing all night in spite of using the heating pad. So I am tired a lot. I started on 2 mg of melatonin but I don't see much difference. What I really need it is a great big fat O, but I am afraid to go there. I think I will need some therapy to get past this hurdle. I am usually not afraid of things but I just am afraid to try.

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